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Tuesday, November 30, 2010

Disneyland Day 1


I am just posting the message Mindy sent me yesterday. SOunds like they are having fun!

Greetings from the happiest place on earth!

So our day has been great! Taylor has captivated everyone she meets...the flight attendants were falling over themselves to give her high fives and dance to Landon's iPod with he before boarding...they played Disney trivia and gave out prizes, and randomly chose a seat of the many children on board to give two DVDs of toy story 1&2 away and Taylor was the lucky winner!

She did great on the flight, enjoyed sitting on my lap to Look out the window, she wasn't scared at all thank goodness...didn't like the seatbelt...and kept taking it off as they are definitely not child proof! She cried for the last 15 minutes...more whined loudly then cried...as she had to keep her seatbelt on for landing and hadn't napped and was certainly done with sitting still for 2 hours 45 minutes on the flight!

Next we had to collect our luggage which wasn't too bad, but then we had to wait on a sidewalk between two busy 3 lane roads of traffic zooming by with all of our luggage and children...no the most genius plan I'd say! Thank goodness it was only about a 20 minute wait but then a 45 minute bus ride to Disneyland...thank goodness she decided to crash on Landon's lap while looking out the window.

So we arrived at the hotel about 2:30 to check in, and we were given a surprise package as they were told that this was a very special trip and Taylor's first time in Disneyland. They had a micro fleece blanket, a mrs.potato head, autographed picture of Mickey and minnie, and three pins that say, it's my first time in disneyland so we get extra special attention from the staff and characters.

We decided to unpack and get situated with everything for our stay, and then hit the park to check out what we were going to do for our time here...we didn't take any jackets as it was +16 or so...but it got pretty chilly with the wind and as the sun went down...people are wearing winter jackets and toques, scarves, mitts, the works...they must have thought we were nuts in our T shirts, we didn't even bring anything for Taylor!

We built Taylor a special customized Mickey ears hat and picked up a few Christmas ornaments, there is so much disney branded everything here it is like Disneyland threw up everywhere...gift shops and trinkets and Mickey and Minnie everything...if you can think of it, they probably have it...so cool!

So we shopped around to figure out what we will pick up from here, everything is super expensive so not sure how many of you will end up with Disney stuff LOL we will do shopping in San Diego if we can find the outlet malls...

We came back to the hotel thinking maybe we would go for a swim on the rooftop pool...but it was too damn cold for that, so we decided to give Taylor a bath, and check in with our family. We came back to our room to find that our beds had been turned down, Disney chocolate coins on our bed and three chocolate chip cookies on a plate for us :) how awesome is that?!?

We are having a fabulous time, Taylor has been tired but still her happy and adorable self...i find it amazing that even among thousands of kids she still manages to stand out and capture peoples attention...I dont know how many times I heard "what a cutie" or "she's a sweetie" or "aww, she's adorable"...she was waving and saying bye and see ya to everyone who walked sway from us on the plane, at the airport, and anywhere we seem to chitchat with store personnel, etc. She really does have something magnetic about her...and this place is full of magic!

We are going for breakfast with Mickey and friends - hoping she isn't terrified of the characters! LOL. Then we are off to the park for an action packed day and to get her autograph book signed.

Will keep you posted, Hoping to get to bed early and get a good sleep! Hope Ruby isn't causing Brenda too much grief...let me know what you think we should get them as a thank you.

Love you lots and can't wait for tomorrow!

Thursday, November 25, 2010

Make-A-Wish...

Hi, SO I have had to keep a secret for over a week...let me tell you that it was very,very hard! The story is as follows...

Landon, Mindy and Taylor went a few weeks ago (okay so I can't remember the date and left my day planner at school so I can't check! LOL) to Marlin Travel in Stony Plain to get their trip to Disneyland all planned. The travel agent helping them, Ellen was touched by their story so a few days later she asked Mindy for my number. Well Ellen called me last week excited and wanting to tell me some stuff that was going on from her end. She told me that she was so touched by Mindy and Landon. She said when they came in they seemed so normal, a normal family planning a vacation. She said she had not heard the hubbub about Taylor, but that after talking with them the story slowly came out about what they had been going through, the fundraising for "Wishes for Taylor", etc. She then had perused my blog and learned a little more.

Ellen said she was contacting me because she was so touched "no parent should have to go through that" and she had told Taylor's story to her sister who works for CN. Her sister was also touched by the story and told her co-workers at CN, asking if they wanted to donate their Safety Award money (around $25/ a person) towards Taylor. So her co-workers said, sure that would be something they would like to do...but the message kept spreading...CN has raised more money than is necessary for the trip. The entire trip with all the bells and whistles has been completely paid for they got her a cute little princess suitcase, princess outfits, shoes, tiara, dolls, etc! But the best part is yet to come...in roughly a week they have raised over $8000 with more coming in that they are going to donate in Taylor's name/honour to the Make-A-Wish foundation!!!!

How does one thank everyone who has participated in all of this fundraising? All of you have poured out your hearts and piggy banks. I am trying to come up with an idea of paying forward all of this, I feel like we need to do something more, help more children. Taylor's story has touched people that is clear, but what about the nameless children going through this? I just don't know. I know when Taylor went through chemotherapy that first year there were the "good" parents and the "bad" ones...the ones who left their kids alone, sick and scared...who will tell their story? I think taylor has become personal to many because she has a face, stories, etc. Those other kids don't and it breaks my heart. All my energy has thus far went into Taylor, Mindy and Landon. I remember paediatric oncology how I felt I needed to do something, but just didn't know what, how or if I could gather anymore energy. SO I am going to leave off here, still thinking how I will help someone, not sure how, but I think I must do this.

Wednesday, November 24, 2010

MRI came back CLEAR!!!

Nurse Clare called Mindy moments ago to report that Taylor's MRI came back clear! OMFG She was not supposed to tell them, but I am sure she did not want them suffering through this waiting until December 16th for the results meeting.

Many questions I know will arise so I will try and answer them here, but if you have any questions please e-mail me at:


Mindy is concerned people will be angry or thinking they have lied...sad that they even have to worry about that, but sometimes there are a few of those jerks out there.

So what does this mean. I don't know. Since the beginning of Taylor's diagnosis I have been a very angry person. People kept telling me to pray, have faith in God.

I will confess here, I tried, but really did not have my heart in it. My Mom recently after the first clear MRI a few weeks ago kept telling me I had to have faith, I had to trust God. My reply was angry "God does not exist! I am sick of all this crap that God is testing us, that we need to trust. If he is supposed to be like a parent than how can he do this. Don't tell me that a parent would teach their child in this type of suffering. NO PARENT would EVER allow a child to suffer like this!"

As you can see I just have been to resistant. One of the reasons that we got HOPE instead of Faith tattoo's was because faith is linked to God...we just did not believe.

Okay so rewind this story. Shortly after Taylor's birth my good friend Shaundell tells me this story ...now remember we have gone through highs and lows, Taylor being clear, Taylor getting tumours. So Shaundell was over for a visit and she says "I need to tell you this story". On the day of Taylor's first surgery September 16th, 2008 these men were wandering around outside her store. She being the nosey girl she is was like "I gotta find out whats going on with these guys ." They were wearing robes and funny hats...obviously NOT blending in! They eventually came in her store. She of course was asking them what they were up to. There were 2 monks from the Ukraine and a priest...they were here as they had been hearing about miracles that were happening here. Okay so I know I sound like I am full of crap, but this is the honest to GOD truth!! Shaundell told them about Taylor. I have known Shaundell forever, when Mindy was in grade 4 it was Shaundell who took her around WEM to sell chocolate covered almonds...bully Harry Rosen when the rich bastard was too cheap to buy a box! LMFAO So these monks and priest told Shaundell they would pray for her, that she would be a miracle baby. Well Taylor made it through the surgery, when we were so scared of what could potentially happen, remember she was 6 days old! It was a miracle they had even found the tumour.

So again last year, tumours back, etc. Priest was back, said they have continued to pray for Taylor. Again Taylor pulls through, surgery goes amazing yet again, radiation goes excellent no changes we can tell in Taylor, which was of course a HUGE fear...all the "what ifs". So when this all happened again this year, this horrible, crushing, rip my heart out diagnosis, Taylor is going to die, its going to be soon, my friend Shaundell says "I want to go hunt down that priest", he needs to pray for her. Low and behold on bloody November 22nd, Monday that Priest, Father Vasil walks in! Again Shaundell tells him about Taylor, again he says he will pray for her. November 23rd she had her MRI...today it came back clear! If you don't believe my tale you can go hear about it at Father Vasil's church this sunday as he told Shaundell he was going to speak about her. The Church is Alaska Orthodox Church at 9930 167st...may even just be cool to go!

Okay so trust me this is a hard pill to swallow. A few weeks ago I discussed with my husband all of this, the MRI with devastation followed by one that was clear. An MRI that completely baffled the medical field who all said "we have NEVER seen this happen before". Fred said "its the hand of Jude". I will let you look up Saint Jude if you don't know who he is so you can piece all this together. I am not sure, but I am starting to wonder if I am being given signs, signs that I do need to have faith, that I need more than hope....Ironically my Aunt Vi just brought back a book for me from her trip called "Questions from little hearts" which is to teach kids about God and answer some of their questions...hmmm

I cannot fully comprehend all of this. I am still struggling. Anyhow from what I can tell what happens next is the meeting on December 16th where the new game plan will be hashed over. The cancer is NOT considered gone, but at this point it does mean there is more time. I am going to guess that they may still want to continue MRI's every 3 months, followed eventually by MRI's every 6 months, and then progressively lengthened.

So remember we still need prayers, hopes and wishes. This MRI does not mean that this fight is not over, but it does mean we have won a small victory today! Going to share a poem my cousin Kim gave me as a teenager on a bookmark

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,

“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”

Mary Stevenson, 1936

Don't forget we must thanks Saint Jude


THANK YOU SAINT JUDE, you have blessed us with a miracle


Tuesday, November 23, 2010

MRI went fine...now we wait

Well Taylor's ear infection caused her to have a really rough night, as well as Mindy and Landon. She ran a fever throughout the night and did not sleep. Mindy said she finally went down for a sleep at 5:30am....ugh super long night for all. Poor little Taylor she must have been really hurting. Taylor seemed to be feeling better however when waking this morning after her extremely short sleep. MRI went fine, no hitches and she woke up happy! Yeah

Now the wait begins. Nurse Clare will see if she can get any information on the MRI by the end of the week, however their official meeting to discuss the MRI will not be until Thursday December 16th. If clear, which is my hope than they will discuss possibly the schedule of future MRI's....every 3 months, or 6 months...whatever they feel is necessary. If they find stuff again I can only speculate that it would be surgery, radiation or nothing. Lets hope for the clear MRI!

What can I tell you...I have hope, and I have fear. I know Mindy and Landon are the same. This has been absolutely exhausting. I am so proud of Mindy and Landon over the past two years. They have shown such tremendous bravery and strength. I know a lot of this also comes from the tremendous positive energy all of you have thrown their way. Thank you so much for being there offering up your cheers for Team Taylor!

Monday, November 22, 2010

MRI tomorrow

Well tomorrow, November 23rd, is Taylor's next MRI. She has an ear infection, but Mindy got her in to the Doctor quickly today, so hopefully she will be feeling much better tomorrow. I just got home from my school's School Council meeting so I am too tired to type much now. I will update soon. The MRI results meeting is not until December 16th as the Doctors want time to really go over all the results with a fine tooth comb...going to be a really long wait!

On Monday November 29th I guess is the day they are leaving for Disneyland. So I will chat soon!

Friday, November 19, 2010

Taylor's New Santa Photo


Nana and Grandpa too Taylor for her Santa photo again this year. She was bribed with a lollipop according to Grandpa.LOL

Thursday, November 18, 2010

Taylor's Going to Disneyland!!

So some may already know, but the Disneyland trip is in process of getting all the details set. They will be leaving on the 27 or 28th returning December 6 or 8th! I cannot wait to share all the details, but will wait until all is finalized. I have been a tad busy lately so just not having all my details straight.

MRI is on the 23rd...follow up meeting is not until December 16th. The Doctor's want time to study everything following the last MRI results. This is a long wait for Mindy and Landon not knowing, but cannot be avoided. Please send strength to them in this time as this is beyond even my comprehension the stress they are under.

Taylor has been good. Had a bit of the flu bug last week, followed by tripping over Ruby, falling into the door frame and cracking a huge goosebump on her noggin. It was truly huge. Don't have the picture or I would post...Landon looked like he was crying to from the pain she was in. Mindy said she screamed bloody murder! Ugh I remember those like yesterday with my own kids! Poor sweety is better now though.

Taylor has had some great visits with Grandpa Don and Nana Roberta as they have helped with looking after her when Mindy and Landon were working late. Such amazing grandparents she has!

Will give a better update when I stop spinning as I just had Parent Teacher Interviews at my school...busy, busy, busy.LOL

Sunday, November 14, 2010

Silent Auction




Well hello, I now have some time to fill you all in on the Silent Auction.

The Silent Auction was a tad crazy, as we had no idea what to expect. The Auction itself was the idea of our Cousin Lisa, who put a Herculean effort into collecting, labelling, photographing organizing donations. Lisa traveled all over the place collecting donations no matter how big or small they were. She was an impassioned woman bent on making "A Wish for Taylor" a success! So much time and love was put into Lisa's Silent Auction it was bound to be successful! Lisa also nailed down the venue at Flow, who was a complete dream to work with! Yeah Flow you all were so amazing as was Charlene who went out of her way to make the day a success!!!! Behind the scenes Lisa also had helpers doing a variety of things...from Asia making "A Wish for Taylor" shirts, to purchasing Henna for "Henna for Hope", Kristen for making a million tiny little gold ribbons for cancer awareness at the silent auction, Jeanne for the most gorgeous Angel wings and Halo's for all the helpers....as well as some extremely happy little girls! Auntie Sharon for doing all the paperwork, Amanda for acting as Master of Ceremonies and giving us all an amazing speech at the Auction to thank all volunteers, especially Lisa!

For our Auction "overseer" we had Eva! Anyone who knows Eva can understand what an amazing facilitator she can be to help get things into the proper places! Eva quickly organized an "Enbridge" work crew in addition to our family & friend helpers. The Enbridge Crew was amazing at helping to make sure we got Flow organized....thanks so much to Cheryl and Nga (Cousin Amanda's co-worker who generously also donated both money and her time, even with having a son who had come to visit her that weekend, she still made the time to come and help!) as well as my bestie Wendy and her daughter Angel for fulfilling my "idea" (always have lots of those.LOL) to attach balloons to the various stuffies Aaryanna had brought to sell at the Auction (and she did pretty darn good...thanks to the generous buying of everyone there, including one of the owners of Flow who bought two for a very generous donation!), so we had beautiful balloon/stuffie decorations throughout Flow!

The Xerox print shop that Enbridge uses also generously printed off some pictures of taylor to hang throughout Flow as well as some beautiful heart shaped photo's for all the volunteers to wear.Thank-you, Thank-You! Kelly from Enbridge was Eva's side-kick who the day before spent hours in co-ordinating all the donations Lisa collected with the bid sheets, etc as well as cataloguing them as the sheet Lisa had created went missing.The bids were then colour co-ordinated so that they would be pulled on times to avoid a rush at the end. We had sooo many helpers, I really just cannot thank or detail all they did, so I hope they can forgive me. Rod and Michelle came after spending an exhausting weekend with a dear and close friend who had lost her five year old daughter, Rayanna, the year before. Rayanna was a beautiful little girl, who last year was found to have a brain tumour...during the inserting of a shunt little Rayanna left us...I am sure you can all understand what an emotional weekend this was an how appreciative I am to Rod and Michelle for still coming and helping out even though they were physically and emotionally exhausted!

Cousins Felicia and Melissa came and helped with set up as well. Edwina was a great helper and spent some quality time entertaining Taylor...sharing fries and "dippy" (ketchup) as well as pop.LOL We were so blessed to have so many little helper bee's! My Cousin Jodi and her daughters Mikki and Maddy sold chocolate chip cookies (Taylor's Favourite) and some various candy for Taylor's fund as well. I am told the cookies were AMAZING! Thanks so much Jodi for putting in the time to make it a special occasion. Melanie Shockey also came out again for both Taylor's Dance Party and the Silent Auction to sell her beautiful barrettes to raise funds and awareness for Taylor. The United Way campaign also did an AMAZING job in helping raise even more funds for Taylor.

We were also blessed as my Cousin Amanda has a friend Kathy who contacted an entertainer, Wayne-o, who willingly and generously donated his time to give us entertainment. He brought along some other musicians and singers who did an OUTSTANDING job! I would definitely recommend these people if you wanted to hire some entertainers, absolutely fabulous music!

We raised a little over $6000! A Great success. Thanks to all that donated as well as came out to bid in our Silent Auction. Mindy and Landon have began the planning and booking of their Disneyland trip...3 days in Disney than the express train to San Diego for 3 days there to see Sea World and other sites. I will keep you posted and hopefully will be reporting on their trip very soon! We are hoping to lay low here awhile as these last few weeks have been exhausting with fundraisers, MRI's, and hospital visits. Hard to believe it has only really been a little over a month since this whirlwind began. We are awaiting the next MRI on the 23rd...I think we are in shock, not fully digesting things, but we still really need your HOPE, your wishes and your prayers! This is an ongoing battle, it is relentless, please continue to keep Taylor close to your hearts!

Taylor's Auntie Leah

Monday, November 8, 2010

Silent Auction

Okay this is a teaser to let you know I am too busy to tell you about the Silent Auction, but I will definitely be telling you all about it! Not sure if anyone got any pictures, which is unfortunate, but it was great! People were amazing and generous.....but you will just have to wait for the details! LOL

Leah....on Report Card duty!

Sunday, November 7, 2010

Taylor's Dance Party!

Yesterday we had Taylor's Dance Party. It was a truly memorable event, filled with love, hope and joy. Natasha Taylor's "day-home provider"(which really does not encompass at all what Natasha is), after seeing the "Wish List" she figured she could hold a dance party for Taylor. Along for this magical journey her friends Tammy MacDonald, Cecilia Lee (from Stollery arranged the slurpee machine and Jumpy Castle), Jaime Isherwood-Caza (with McDonald's arranged all the food stuffs such as drinks, sliced apples, muffins, etc), Christy Rudy-Peters(got Mayfield School for our use as well as made lovely cupcakes...my favourite! LOL), DJ (donated his time and played some amazing tunes, even Lady Gaga who is Taylor's fav!), the Holtes(brought the mini winnies a.k.a tiny ponies!). Let me tell you this was an amazing event.

As we entered there were two children who greeted us. You could see signs on the building, streamers and balloons. As you entered, there was a wood cut out with a girl body and a boy body that kids could stand behind and stick their faces in the face cut out. Than as you moved into the gymnasium there were all sorts of lovely centres. You could enter a raffle to win some donated prizes (by "baba" as the kids call her. Natasha's Mom whom they get to call as a reward for being good.LOL). There was a easel with 3 pics of Taylor and lots of white space to write a message on as a keepsake, a jellybean container to guess how many jellybeans were in the jar, 50/50, and some balloons all made into various shapes....many little monkey's, which is what we call taylor!

There was a huge jumpy castle in one corner, face painting in another, cotton candy and popcorn machines, large tables full of goodies, of course a dance floor! There were tables at the back with some kids toys to play at, tables throughout all decorated with huge balloon centrepieces...just a whole ton of fun for everyone! The kids jumped, they danced and then at around 2:30 the mini winnies appeared with a wagon to take Taylor for a ride. Taylor was not happy about the wagon, but she did like the mini winnies! LOL She led them around for a bit. It was such an amazing day! Taylor just didn't stop the entire time she was there, she boogied, she jumped, got her hands painted, then painted Mindy and Landon's faces...that was lovely.LOL

Saturday, November 6, 2010

Dance Party Extravaganza!

Hello,
So today we are having Taylor's private dance party (MIndy wanted to keep it small so that Taylor was not overwhelmed). It should be absolutely amazing. Natasha and her friend Christy I believe have organized it....with I am sure others! Thanks you ladies for your kindness in doing this for Taylor, I am sure she is going to have an absolute blast!

I will try and post some pics, etc later today! Have an amazing day. I hope to see many of you tomorrow at the Silent Auction!

Leah

Wednesday, November 3, 2010

It's Potty Time!

Well as of yesterday Taylor has been giving the potty a try.LOL She had her first pee on the potty at Natasha (Day home Extrodanaire) and then a poop at home last night! Apparently she had 2 pees at Grandpa's today and many, many false trips to the potty! LMAO Funny I am reporting such silly stuff.

So things are humming along like normal. Mindy returned to work on Monday, but then found out she needed a Doctor's note to return, so she actually didn't start back until Tuesday.LOL I know Mindy is happy to be back at work with some amazing people she works with. I can honestly say that the people of Enbridge have been so kind, so thoughtful, and sensitive. I really, and I mean really have NEVER heard of co-workers who band together to help in so many ways. It is truly an amazing thing to witness such kindness! THANK YOU ENBRIDGE!!!!! I know everyone is going to want to know what they have been doing, so I will share just a few, but trust me....they are so AMAZING! LOL First they have conducted their own fundraisers, opening their pockets to donate money, gift certificates, etc. Then we have co-workers like Melanie Shockey who got a group of her fellow staff to help her make hundreds of ribbon barrettes to sell and donate all proceeds to Taylor's Wish, as well we have had so many numerous donations for the Silent Auction happening this Sunday, a nice vacation Gift Certificate from the lovely Ms. Eva in case Mindy and Landon just need to get away, Volunteers to co-ordinate our Silent Auction (EVA) as well as volunteers to help. Mindy received an e-mail describing one woman's idea that she was concerned Mindy came back because she might have had to due to financial reasons, so this woman went to begin requesting to potentially have other Enbridge employees donate "days" so that Mindy would not suffer financially but be allowed to take time if she needed....trust me these people have endless things they have and do for Mindy and Landon. If you meet any of them, give them a huge hug or pat on the back! No wonder she wanted to get back to work.LOL

We are all busily planning for the upcoming Silent Auction Sunday November 7th from 2-8 at Flow. We have had help in acquiring some entertainment for the day, so it should be an amazing day! Hope to see you there,

Leah

Tuesday, November 2, 2010

Clarification

Hello,
I have been having some people question what is going on with all this "testing". Many know that Taylor has a rare for of Brain and Spinal Cancer. What this means is that it does not occur in huge frequency to large numbers of the population. This being said it also means that they don't know all that much about it, other than its "BAD". The life expectancy on this cancer is extremely short and generally speaking 5 years is generous. There is I believe only ONE doctor that "specializes" or knows that much about her form of cancer, Anaplastic Ependymoma. I am not discounting the Doctor's here as they have been fabulous and actively seek as many opinions from as many specialists that have dealt, deal with this cancer.

Taylor was always never thought to make her first year, but she did; however, this is not a perfect ending as the cancer was still there, still growing! The only "real" treatment form for this is surgery to remove tumours and then radiation. It was a miracle it was found when it was as she probably would have been dead within months with the tumour she was BORN with. Nothing Mindy and Landon "did" caused this cancer...it just is one of those weird things in life. Taylor never received radiation her first year as it would have caused irreparable damage due to her age.

So when her first year went past...MRI's every 3 months, we prayed, and hoped it would go away, that all the cancer was cut away in her first surgery at 6 days old, a year of chemotherapy every 2 weeks...these were terrible and beautiful months, but trust me I could tell you all the horrors, stress, fear that we had. Then we got her MRI that is always anniversary to her birth when she was one...tumours were back! Devastation...Mindy and Landon were left with sooo many horrible choices, another surgery, radiation and work. Surgery could always cause damage, they never wanted to give Taylor a life where she was not going to be able to "live" like a child just because of their own wanting of her to live, a horrible choice for a parent. Luckily Dr.Pugh is an AMAZING and HOT surgeon who did such an amazing job, he even used plastic surgeon stitches that nurses commented on as they are extremely uncommon, especially the intricate way he insured that it would be a "beautiful" scar (yes I say beautiful). Next was Radiation, what would happen, would it cause severe retardation, what? Again on a wing a prayer they went with it as they consulted all the AMAZING doctor's who assured that it would not cause "serious" problems for Taylor's quality of life. Now work...well it is really hard to look after a BABY who has such severe needs in care and work, someone needed to stay home. Landon after having to miss most of that first year as he worked out of town and would have to continue to, decided that Taylor might not have a very long life and he wanted to make sure he spent some time with her....This was hard, it is hard to go from a double income to a single income with all the costs associated with a child who has cancer. Yes some money is reimbursed for some medical costs, but a lot is not, especially any incidentals of the parent caring for the child...radiation for 33 days straight...and then recovery time from radiation another month and a half.

So now we are in year two...we had 6 good months, but guess what...the cancer came back. The MRI from the beginning of October showed Tumours...they were shown to Mindy and Landon! The meeting it was decided that Taylor would undergo radiation again for 33 days straight. Within the week as Mindy scrambled around getting all necessary prep for Taylor to undergo radiation, surgery for the PIC line, PIC line infected, I got a text from Mindy at work(to me) and it was "Claire just called...her voice was shaky, said "life's not fair" we need to have a meeting tomorrow, its not good" Mindy was in the Costco parking lot trying to hold it together, not to break down. I told Mindy to wait I would be there! Of all things I was reading fairytales with my Reading 7/8/9 class. My principal, just by the grace of God came by to ask me something. I showed him the text, he kindly told me to go and he would look after my class, to take whatever time I needed. So this was tragic on a whole different level. We already were dealing with the devastation the cancer was back, now it was "worse" how could that possibly be?

The MRI was looked at by 4 different radiologists as Dr.Patel, the amazing radiation oncologist, just was not having the MRI sit right with him. It was so important that they get a good diagnosis. It didn't look good. Mindy and Landon were told, I was there, that they needed to basically decide whether they wanted to bother with any treatment options as Taylor's prognosis was now fatal...they had hoped that the radiation they were planning might give her another year or two, but they now with new analysis felt that just was not going to happen. Radiation would only lessen her quality of life for the short time they predicted she would have. You see, Taylor's cancer grows faster with every recurrence...6 good months the last time, could mean a much shorter time!

Dr.Patel however said he was still going to have one more radiologist look at the MRI. This radiologist said he felt the MRI was "inconclusive" and that another one was needed. So Taylor underwent another MRI on Oct.20th. This MRI had some bizarre results that some are misinterpreting, as Doctor's were baffled as it did not show the same results, so therefore the next move was the Spinal tap or LP to see if there was cancer cells disseminated throughout her spine. We just got those and they showed it clear. So people want to know what that means. But it does not mean that either necessairily, as it is all dependent on a small sample of the spinal fluid which may or may not have captured a representative sample of the fluid. I hope you are seeing how this is the worst nightmare as there are NO answers. We now have to wait the next MRI on Nov.23rd to see if we can see Tumour growth, etc...the cancer may still be there, maybe its not as bad as the death forecast, maybe it is...we don't know, the doctor's don't know. There just are no answers. The doctors have said, time and again, that this cancer just is not one they can predict.

So saying all this I hope you can see that although we celebrate these "good" results as victories, we still have had and will have MRI's every 3 months, that we will be completely distressed, every 3 months. Sometimes we get a 6 month reprieve when they can't see the cancer, but her having all the recurrences that she has had, her long term outlook is bleak in medical terms. Does that mean I don't HOPE for a miracle? NO Cancer does go into remission, but it takes a solid 5 years cancer free to really make any statements on NOT having cancer.

SO if you have ANY questions regarding this DO NOT ASK MINDY OR LANDON! Ask me! I think they have enough stress than to have to field questions about this stuff! I know how amazing the support we have been blessed to receive is, but honestly those questions take away their energy that they need for Taylor. Please understand how horrible this has been and continues to be...the not knowing, the fear, the anguish. I am saying this because as much as people mean well these questions are being asked of them and I think its only fair that they be redirected so that this is not another stress on their lives. I appreciate your consideration. I know what is happening so I can answer any of your questions regarding this or can get you the answer!

Taylor's Auntie Leah

Monday, November 1, 2010

Thank you Thank you!!!!!!

The results are in and the Spinal Tap or LP came back CLEAR!!!!! OMFG I don't think I can express the joy I am feeling...yes, I am crying, crying!!! Feel like I have won something today! Your prayers, hopes and wishes have worked! Love you all!!!!